One More Time for Good Measure

Yesterday marked the 42nd day C has been in the hospital since she was first admitted for her pre Fontan cath. Granted, she has not spent all 42 days in a row in the hospital. She has actually been home for 22 total days in the past 64 days. 64 days. 64 days we have been living with C post Fontan and all the complications she has had from the surgery. I am so over the Fontan it is not even funny. I know logically this is really the only real chance C has to extend her life for any reasonable amount of time. However, the Fontan has been horrible to her so far. Last night we got back from the hospital yet again. Her second re-admission since the Fontan. She continues to produce fluid and it continues to collect around her heart. Yeah, awesome. The best part is that the pericardial effusion post Fontan is not what "they" generally see. Pleural effusions, fluid in the lung space, are the common complication from the Fontan. The pleural space is where the fluid collects and this pleural effusions are what keep kids in the hospital for so long. Not pericardial like C's. Oh no. Not my daughter, the total 1%. IF the doctors tell us there is a 1% chance for a particular complication, you can pretty much guarantee that C will hit that 1%...and let me tell you, I am very, very tired of her being the 1%. If I had my choice her 1% would be in belonging to the 1% on wall street or the 1% who win the lottery. Anyway, after have massive amounts of Lasix pumped through her system with the result being an very high heart rate (which she hates and her sats hate and we hate because we are terrified it will trigger her atrial tachycardia) and the massive amount of Prednisone, the steroid, resulting in my precious 2 year old daughter looking like she is ready to suit up as an offensive lineman for the Gators the doctors have decided that they need to be more aggresive in fighting the ever persistent pericardial effusion. So, off to the hospital we go, again. And off to surgery C goes again. This time to have a thoracotomy with the placement of a pericardial window. Um, yeah. Whatever that means. In all actuality, this approach was much nicer and kinder to C. This procedure in normally done through the sternum or just below but both result in the cutting open of her sternum again. Thank goodness for C's rockstar surgeon who did not want to do that. So, he actually went in her left side, between her ribs to access the heart. So although she now has a brand new scar, yuck, she did not have to have her sternum reopened nor did she have the bleeding out issue which we would have to be prepared for by the surgeon going through all that scar tissue in the front. The surgery went well and C did awesome. The pericardial window is where the surgeon removes part of the pericardium allowing for the fluid to flow in the pleural space. Basically we took away the pericardial effusion by giving her a pleural effusion, which she did not have before. Acutally, she has had like no fluid collection around her lungs, aside from immediately post surgery when she was bleeing out into the left side. See, the 1 freaking percent. The hospital stay was not awesome. Not that any really are awesome but this one just really sucked. We were originally put on the main floor, um, really? And sat there for 4 hours doing nothing until the cardiologist used his pull to get us into the cardiac icu. Apparently the hospital was just slap full up. The cardia icu and the picu. We opted to go back to Tampa instead of St. Pete. Tampa is where she was for the month after her Fontan. Finally we get moved and then they are like, now we need an iv, etc. I think Kevin was about to blow a fuse. He actually came home early from a business trip to Atlanta since we were informed of how bad this was for C. So to sit on the floor for 4 hours with nothing and then have to go through all this crap around 7pm with shift change and C's eating and bedtime just made no sense at all. So, surgery was the next day and all was good. Then on Sunday, the day her 7th chest tube was pulled, and 3 days post op I am informed they are going to move her back to the floor. I was all like, oh hell no you are not moving my child to the floor. If she is stable enough to go to the floor, then we can go home. I know more about my child and taking care of her then the nurses on the general floor do. We lasted another day in the cardiac icu and then on Monday we were moved to the picu. I am ok with the picu, at least the nurses there are trained in critical care and they cross train in the cardiac side. But, I was still pushing to get C out of the hospital. Tuesday was the magic day. She is still on lots of Lasix, but thankfully less, so she is not as dry as she was and we are agressively weaning the Prednisone as it does not seem to be working anyway. Now we wait. Again. Awesome. We did not actually fix the problem. C is still producing too much fluid. Motrin and then Prednisone are what is used to try and stop the fluid production as both are anti-inflamatories with the Lasix acting the dumping mechanism. But being as though the Motrin and then the Prednisone have not seemed to work to help stop the fluid C now has the pericardial window. Which of course will only stay open for about 3 to 4 weeks. So in all actuality, we could still be looking at ways to address this problem in 3 to 4 weeks. Fontan take down has been whispered. But, C's cardiologist and surgeon are not on board with that yet. I say yet, because who knows what will happen if C continues to struggle and limp along like she is doing. Oh, and of course she is still on oxygen as nothing at all has helped bring her saturations up. I am bitter. There is no other way to say it but that I am bitter. C does not deserve this. I handed my energetic, full of life, happy, smiley daughter over to the doctors with the utmost trust and this C is what I have in return. Every day I work to not be bitter and try and adjust and be grateful for C still being here. C is not the child in the cardiac icu who likely died today after being put on ecmo two days ago. She is not the other child on ecmo in the icu either. She walked out of the hospital yesterday with a perma-grin on her face, truly happy to be going home and seeing her boys and for that, for that alone, I will be grateful.